1. cbirt. org Ann Glang, Ph.D. Deborah Ettel, Ph.D. Center on Brain Injury Research and Training

2. cbirt. org Outline Summary of issues in educating children with TBI Student Transition Re-Entry Program Preliminary findings from multi-site study

3. cbirt. org Partners Cincinnati Children’s Hospital Medical Center Nationwide Children’s Hospital Rainbow Babies & Children’s Hospital MetroHealth, Cleveland The Children’s Hospital, Denver Legacy Emanual Hospital, Portland Center on Brain Injury Research and Training Colorado Department of Education Ohio Department of Education Oregon Department of Education

4. cbirt. org CHALLENGES WHY ARE CHILDREN WITH TBI DIFFICULT TO SERVE?

5. cbirt. org Parents often believe that rapid pace of early recovery will continue Parent and educator expectations may not match

6. cbirt. org I think parents can be the biggest obstacle to good transition back to school. They’re dealing with denial, grieving, avoidance. When I call parents at home to follow up after the kid is back at school, I often hear, “They’re fine, they’re fine, everything’s fine.” ~Ohio parent advocate Parent Expectations

7. cbirt. org Often new to the special education system Under tremendous stress (emotional, physical, financial) Parent Experience

8. cbirt. org CHALLENGE Often parent-professional relationship becomes adversarial Different expectations High stress

9. cbirt. org Unique Student Characteristics Unfamiliar to educators

10. cbirt. org Inconsistent learning profiles Initial improvement can be dramatic Effects of TBI are subtle and confusing Heterogeneity of disability Student Characteristics

11. cbirt. org Child injured at an early age – impact not seen until years later “Forgotten” Injuries

12. cbirt. org Two days before her first birthday she was in a head on collision. We didn't realize anything was wrong until she started kindergarten and had a horrible time concentrating and learning... ~Kansas parent

13. cbirt. org TBI is an “invisible disability” Students may have no physical signs of disability

14. cbirt. org I need to be careful how I say this… It’s almost like it would’ve been better if the injury were severe enough that we would’ve had to have gotten help. With TBI, the moderate to mild…it’s invisible. People don’t see it and then people don’t get the help that they need. ~Parent Invisibility

15. cbirt. org Preservice training in ABI is lacking Inservice training is often ineffective

16. cbirt. org Survey of educators in Pacific Northwest Sample: Teachers who were currently working with students with TBI N = 65 Educator Training in TBI

17. cbirt. org Have you had training in acquired brain injury?

18. cbirt. org “As educators, we don’t have a handle on this disability” ~Oregon special education administrator

19. cbirt. org There is no systematic method for connecting children and their families with services within the school and community following TBI.

20. cbirt. org Back to School Study (US Department of Education, Grant # H324C010113) Purpose: Document hospital-school transition experience of children with TBI N = 56 Inclusion criteria: 24 hour hospitalization 76% of children had severe TBI Glang, Todis, Thomas et al., 2008

21. cbirt. org Back to School Study Findings Key factors related to provision of formal special education or 504 services: injury severity hospital-school transition services

22. cbirt. org Challenges Students with TBI are unique There is a lack of understanding of TBI Parents and educators have different perspectives There is no systematic method for connecting hospital and school

23. cbirt. org Addressing the challenges Less is more: Identifying one area for intervention Hospital-school transition: Biggest bang for the buck

24. cbirt. org Improving the link between hospital and school

25. cbirt. org STEP model Grounded in experience of families and of hospital and school personnel in five states Focus groups with hospital rehabilitation personnel, administrators, social workers Interviews and observations with parents, teachers, school administrators, support personnel

26. cbirt. org STEP (Student Transition and re-Entry) model State Department of Education (DOE) provides a single point of contact for all hospitals to call DOE informs trained regional liaison Regional liaison informs the school offers resources to family and school

27. cbirt. org STEP ongoing support School staff access training and support as needed Parents can contact the liaison at any time Progress of students is tracked by DOE annually

28. cbirt. org R4 R3 R6 R1 R2 R7 R5 R8

29. cbirt. org Key elements of STEP Facilitates Special Education identification of students with TBI—especially those not discharged from rehabilitation Provides user-friendly resources to families and schools Tracks kids through school so TBI is not “forgotten”

30. cbirt. org STEP Evaluation Randomized controlled trial Sites in Ohio, Colorado, Oregon 5 hospitals, 3 Depts. Of Education

31. cbirt. org Sample Current N = 140 Preliminary analysis: N = 70 Children/youth ages 5-19 who: Are enrolled in school Were hospitalized at least overnight for TBI

32. cbirt. org Study Design: RCT Student assigned to STEP or usual care Parent and 1-2 teachers complete baseline measures Reassessment at one year T0 in hospital, T1 at 30 days post-injury, T2 at 1 year post-injury

33. cbirt. org Parent Measures State/Trait Anxiety Index Brain Injury Partners measures of advocacy skill Child Behavior Checklist (CBCL, aka Achenbach) CASP – Child & Adolescent Scale of Participation CASE – Child & Adolescent Scale of Environment Brief BRIEF (24 questions) STEP measures of parent concerns/services needed/provided/satisfaction

34. cbirt. org Teacher Measures Demographics-including experience/training Teacher Knowledge STEP measures of teacher concerns/services needed/provided/satisfaction BRIEF (full) CBCL SSBS – School Social Behavior Scales (Scale A)

35. cbirt. org Preliminary Findings Measures (reported here) Parent survey School records

36. cbirt. org Sample: Age at Injury Mean age: 14.11 years (SD =3.81 yrs) Range: 6.0 - 20 years N = 70

37. cbirt. org Severity of Injury Frequency Count N = 70

38. cbirt. org Student Grade Frequency count N = 70

39. cbirt. org Received inpatient rehabilitation services? Percent of sample N = 70

40. cbirt. org Special Education Services Percent of students post-injury who have IEP N = 70

41. cbirt. org Students receiving SpEd. Services N = 35

42. cbirt. org Does STEP make a difference? When they returned to school, children/youth who received inpatient rehabilitation received similar school services across treatment condition

43. cbirt. org Results by TX Condition No statistically significant differences between outcomes for STEP vs. Usual Care

44. cbirt. org Does the effect of STEP depend upon whether or not the student had rehabilitation services? Control for rehabilitation services status

45. cbirt. org Treatment effects controlling for rehabilitation services status Procedures: Sample divided by Rehab (28) vs. No Rehab (42) Each group contained tx & control

46. cbirt. org % Students (non-rehab) with IEP at Time 2 N = 28 No Rehab

47. cbirt. org % Parent Overall Satisfaction at Time 2 N = 28 No Rehab

48. cbirt. org STEP children/youth who did not receive rehabilitation received more types of support service than did students in usual care Types of services: Academic, Speech-Language, Vision, Social-Behavioral, Physical, Medical, and Transition

49. cbirt. org Big Picture For children/youth who did not receive rehabilitation, those in STEP showed better results compared with Usual Care: more likely to be found eligibility for special education under the TBI category parents report school staff more helpful parents express more satisfaction with school services

50. cbirt. org What does it mean? Promising initial results suggest that for students who do not receive rehabilitation, STEP can help. Students who get STEP support are more likely to get connected with appropriate services

51. cbirt. org Next Steps on STEP Continue data analyses Teacher measures One-year student outcome measures One-year follow-up study Funded by OH Emergency Medical Services (Dr. Keith Yeates lead investigator)

52. cbirt. org Next Steps on STEP Work with states to implement Fidelity is important: Using part of the recipe for success may not lead to the same outcomes

53. cbirt. org STEP in your state: Key components Coordinator at state/regional Department of Education Regional liaisons Coordinator at hospital

54. cbirt. org Contact us Ann Glang, PhD Debbie Ettel, PhD Center on Brain Injury Research and Training Teaching Research Institute Western Oregon University www.cbirt.org glanga@cbirt.orgglanga@cbirt.org etteld@cbirt.org